Thursday, September 27, 2012

Each morning when he wakes up, Brian wants to run into Gavin's room and help unzip his tent bed. He says "Good morning, Gavin! How are you today? How did you sleep? Okay? It's sunny today!"

And then at bedtime, invariably, he wants me to stop reading him a book if he hears Gavin cough or make a sound from his bed. "Mama, go see if Gavin is okay and then come back."

If I open the basement door, I hear "Mama, close the door. We don't want Gavin to fall down the stairs!" And if I am changing Gavin's diaper, he'll often carry over a toy for him. If I ever had a fear about their relationship - it's slowly being erased. I know they will always have an unbreakable bond.

The other day at school, Brian's teacher was talking to the class about feelings. One day, the feeling they focused on was "happy" and they talked about what makes all of them happy. Each student was given a blank face and they were asked to turn it into their version of a happy face - and to write what or who makes them happy. This is what Brian did...

I know that Brian will likely have a instinctive draw towards and compassion for people with special needs because of his brother. I already see it. There is a little boy with Down Syndrome in his class and he gravitates towards Brian. This morning when I dropped him off, he took this little boys hand to walk him into school. I'm so proud of his sweet heart.

Gavin continues to do so well in school! I have been getting wonderful updates that he's cruising around in his walker and attempting to feed himself and participating in some of the activities. Everyone is so impressed with him!! Before he started school, I worked a lot with him in the evening in his walker - I would just let him go and let him figure it out if he got himself into a jam. I'd like to say this was a brilliant move to foster independence...but it was really out of necessity. Bending over to hold onto his walker was killing my back! Check out how well he's doing....and pardon him for his lack of pants. Ha ha!

In two days (TWO DAYS!!), my little baby will be five years old. I just can't believe it. Our plans to go to the beach and boardwalk in New Jersey are up in the air at the moment. The forecast shows rain two out of the three days...

I'd rather not sit in a room staring at each other while it's raining outside. We can do that at home! It's possible we may go down Saturday and come home Sunday...but we'll see. I'm very excited to test out Gavin's new travel bed! Granny was generous to buy it for Gavin for his birthday and Christmas present. A twin mattress fits inside of it - and then the tent straps to the bedframe.

If we go to a hotel (where a twin bed is hard to come by!), we can just bring a twin air mattress with us. We'll no longer have to worry about Gavin falling out of a bed...and we won't have to travel with a full size crib anymore. I'm so excited - this will open up so many more traveling opportunities. The bed is called a Nickel Bed Tent by Ready, Set, Bloom! It was invented out of necessity by a family with an autistic son. I love supporting other special needs families!!

Whatever we end up doing for Gavin's birthday, it will be awesome. His second present (after the tent bed!) rolled in yesterday. My friend, Julie (who took the photos in my current header!), sent this awesome trucker hat for Gavin. Is this hilarious, or what??? And so thoughtful!!

And tomorrow, Miss Sara, Gavin and I will be taking a road trip to pick up this bad boy...

(other family not included)

I found it on Craig's List an hour away and it was exactly what I was looking for. The slide is adjustable to accomodate a child up to age 8! And there are several ways to climb up onto it - which will be great fun and great practice for Gavin all winter. All winter? Why, yes...because I'll be putting this in our living room. Because a living room is for living. Living large. That's how we roll. Let's face it, it's not like we'll be having the mayor for tea anytime soon. Or the Queen. (Or anyone!) We're going to do some big, fun, living around here from now on. Jumping in puddles kind of living.

2 comments:

My son has CP and we ended up buying him a smaller version of the climber. It has hands down been the best decision I have made. He has made a ton of progress with his motor skills. He has learned how to sit and slide appropriately. I no longer have a heartattack when we go to playgrounds. We kept it indoors in our living room as well. I actually purchased a bigger one like yours but am waiting until his 3rd birthday to put it together. It will go in the dining room. This post made me feel alot better about my decision. I took it to my husband and said see we are not the only ones. LOL.

It breaks my heart to read the plans you had for Gavin. Its not fair. I can't help but cry. I cry for Bryan Bc their relationship was.. IS so special. My son reminds me of Gavin. My son has Spina bifida. My heart breaks for u, for Bryan and Hope and all that they r missing out on Gavin but u do a great job of keeping his memory alive every day! They'll NEVER forget him or the unbreakable bond! :'(

Who I Am...

Hi! I'm Kate. I'm a positive thinker, an amateur blogger, a jokester, and a reality TV junkie. I'm also very lucky to be a stay at home Mom to Gavin and Brian. I have a husband that has a big laugh, a big heart and a big talent for cooking. (Thank God) Our life is not always easy, but it turns out it's more than I ever dreamed it would be. I write about Gavin's disability, his miraculous progress, Brian's successful recovery from a peanut allergy and a speech delay, my Rheumatoid Arthritis and infertility journey and our crazy, incredible, roller coaster of a life. I also remember and honor our daughter, Darcy, who we met after 5 1/2 months of my pregnancy.

I feel honored that you're here to get to know us.

Want to know more? Click on each link under the pictures at the top of the page to read our stories...

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Gavin's Playground Project

Gavin's Playground Project was born from my desire to see an "All Abilities" playground built at Nemours/A.I. duPont Hospital for Children in Wilmington, Delaware. This is the hospital where Gavin spent a lot of time during his life... and where he ultimately died, surrounded by friendly and familiar faces. To mark the one year anniversary of his death, I held a fundraiser on April 5, 2014. You can read all about it in THIS post.

We raised a LOT of money, but not enough for a playground! If you would like to contribute to help make this playground a reality - so no kids will ever have to sit on the sidelines watching their peers play - you can contribute directly to the hospital through the Chasing Rainbows fundraising page HERE. Your donation will go directly to the hospital for the playground and is tax deductible. You can also create your own fundraising team page and start collecting donations in honor of anyone you want!! There is also a mailing address on their page if you prefer to mail a check. Designate your contribution in memory of Gavin Leong - or write in that this is for the playground so your dollars will go to the right place. Thank you for your support of Gavin's Playground Project!

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Gavin's Trust Project

I created "Gavin's Trust Project" to help support Gavin's friends who receive services from the Chester County Intermediate Unit in Pennsylvania. I wanted to continue to try to "make the impossible... possible" for kids like Gavin, knowing well how hard it can be to get much needed "special needs" items. It makes me happy to know that even after his death, Gavin continues to help others. Click HERE to learn more about the Trust Project! All of your donations, big and small, will be added to Gavin's Trust Project to help therapists and teachers get what they need for children in this program. You can write a check made out to CCIU and mail it to: Chester County Intermediate Unit, c/o Deb Hiller, 455 Boot Rd., Downingtown, PA 19335. Please be sure to add "Gavin's Trust Project" in the memo. Thank you on behalf of me and my little superhero!